Pulmonary Hypertension Association Registry

NCT04071327 | Recruiting

• 1 other identifier: PHAR
• Study Type: observational
• Target: 3,000
• Locations: 1 country
• Sites: 52

Brief Summary

The PHA Registry (PHAR) is a national study about people who have pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). PHAR collects information from people with PAH and CTEPH who are cared for in participating PHA-accredited Pulmonary Hypertension Care Centers throughout the U.S. PHAR will determine how people with PAH and CTEPH are evaluated, tested, and treated, and will observe how well these participants do. The goal is to see if people with PH are treated according to recommended guidelines, and to see if there are certain factors that can lead to better or worse outcomes. PHAR will include information about people with PAH and CTEPH in the U.S. who are seen at participating PHA-accredited PH Care Centers. PHAR contains data about patient care and outcomes. Specifically, data in the PHAR includes information on diagnosis; clinical status; socioeconomic status; diagnosis test results; body size; treatment information; interest in participating in clinical trials; family health and social history; and information about smoking, alcohol, or drug use. Participants are followed over time, and provide updates such as changes in therapy, how often participants need to go to the hospital, and survival. Such information may help healthcare providers provide better care.

Conditions

Pulmonary Arterial Hypertension; Chronic Thromboembolic Pulmonary Hypertension; Pulmonary Hypertension

Outcome Measures

Primary Outcomes (3)

• Proportion of PAH and CTEPH patients completing all guideline-recommended diagnostics

  PAH guideline-recommended diagnostics assessed include chest radiography, echocardiogram, ventilation-perfusion (V/Q) scan, pulmonary function tests, overnight oximetry, and right heart catheterization and identified as either "completed" or "not completed"

  10 years

• Impact of clinical predictors of disease worsening on patient outcomes

  Prognostic importance of disease worsening predictors including changes in World Health Organization (WHO) / New York Heart Association (NYHA) functional class (I-IV), 6-minute walk distance in meters, and brain natriuretic peptide (BNP) in pg/mL on survival.

  10 years

• Survival

  10 years

Study Arms (3)

Pulmonary arterial hypertension (PAH)

Patients with newly diagnosed or established PAH, within 6 months of first outpatient visit to a PH Care Center

Chronic thromboembolic pulmonary hypertension (CTEPH)

Patients with newly diagnosed or established CTEPH, within 6 months of first outpatient visit to a PH Care Center

Group 3 PH due to Developmental Lung Disease

Pediatric patients with newly diagnosed or established Group 3 PH due to developmental lung disease, within 6 months of first outpatient visit to a PH Care Center.

Eligibility Criteria

• Age: 0 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

New patients to a PHA-accredited PH Care Center (PHCC) with either newly diagnosed or established pulmonary arterial hypertension (PAH), chronic thromboembolic pulmonary hypertension (CTEPH), or pediatric PH due to developmental lung disease within 6 months of first outpatient visit at the PHCC.

You may qualify if:

• All age groups
• Written informed consent
• Pulmonary arterial hypertension (PAH), chronic thromboembolic pulmonary hypertension (CTEPH), or pediatric PH due to developmental lung disease
• Within 6 months of first outpatient visit at a PH Care Center

You may not qualify if:

• Diagnosis of WSPH Group 2 pulmonary hypertension
• Diagnosis of WSPH Group 3 pulmonary hypertension, except PH due to developmental lung disease
• Diagnosis of WSPH Group 5 pulmonary hypertension

Sponsors & Collaborators

• Pulmonary Hypertension Association, Inc.: lead

Study Sites (52)

Arizona Pulmonary Specialists, Ltd.

Phoenix, Arizona, 85012, United States

RECRUITING

UC Davis Health

Sacramento, California, 95816, United States

RECRUITING

UCSF Medical Center

San Francisco, California, 94143, United States

RECRUITING

UCSF Benioff Children's Hospital

San Francisco, California, 94158, United States

RECRUITING

Cottage Health System - Santa Barbara Pulmonary Associates

Santa Barbara, California, 93105, United States

RECRUITING

Stanford University

Stanford, California, 94305, United States

RECRUITING

Children's Hospital Colorado

Aurora, Colorado, 80045, United States

RECRUITING

UC Health - Anschutz Medical Campus

Aurora, Colorado, 80045, United States

RECRUITING

University of Connecticut Health

Farmington, Connecticut, 06030, United States

RECRUITING

Mayo Clinic Florida

Jacksonville, Florida, 32224, United States

RECRUITING

Northside Hospital

Atlanta, Georgia, 30342, United States

RECRUITING

Indiana University Health

Indianapolis, Indiana, 46202, United States

NOT YET RECRUITING

University of Iowa Hospitals & Clinic

Iowa City, Iowa, 52242, United States

RECRUITING

KU Medical Center

Kansas City, Kansas, 66160, United States

RECRUITING

Kentuckiana Pulmonary Associates

Louisville, Kentucky, 40202, United States

RECRUITING

Ochsner Medical Center

Jefferson, Louisiana, 70121, United States

RECRUITING

LSU Healthcare Network Clinic

New Orleans, Louisiana, 70115, United States

RECRUITING

University of MD Medical Group, PA

Baltimore, Maryland, 21201, United States

RECRUITING

Johns Hopkins University

Baltimore, Maryland, 21287, United States

RECRUITING

Henry Ford Hospital

Detroit, Michigan, 48202, United States

RECRUITING

University of Minnesota Health

Minneapolis, Minnesota, 55455, United States

RECRUITING

Mayo Clinic

Rochester, Minnesota, 55905, United States

RECRUITING

Washington University in St. Louis

St Louis, Missouri, 63110, United States

RECRUITING

Weill Cornell Medical Center

New York, New York, 10021, United States

RECRUITING

Columbia University Medical Center/NewYork-Presbyterian Hospital

New York, New York, 10032, United States

RECRUITING

University of Rochester Medical Center

Rochester, New York, 14642-0001, United States

RECRUITING

UNC Chapel Hill

Chapel Hill, North Carolina, 27517, United States

RECRUITING

Duke University Medical Center

Durham, North Carolina, 27710, United States

RECRUITING

Cincinnati Children's Hospital

Cincinnati, Ohio, 45229, United States

RECRUITING

UC Health

Cincinnati, Ohio, 45267, United States

RECRUITING

The Oregon Clinic

Portland, Oregon, 97225, United States

RECRUITING

University of Pennsylvania

Philadelphia, Pennsylvania, 19104, United States

RECRUITING

Allegheny General Hospital

Pittsburgh, Pennsylvania, 15212, United States

RECRUITING

University of Pittsburgh Medical Center

Pittsburgh, Pennsylvania, 15213, United States

RECRUITING

Rhode Island Hospital

Providence, Rhode Island, 02903, United States

RECRUITING

AnMed Health

Anderson, South Carolina, 29621, United States

RECRUITING

Ft. Sanders Regional Medical Center

Knoxville, Tennessee, 37916, United States

RECRUITING

Vanderbilt Children's Hospital

Nashville, Tennessee, 37232, United States

RECRUITING

Vanderbilt University Medical Center

Nashville, Tennessee, 37232, United States

RECRUITING

UT Southwestern Medical Center

Dallas, Texas, 75390, United States

RECRUITING

Texas Children's Hospital

Houston, Texas, 77030, United States

RECRUITING

Baylor Scott & White

Plano, Texas, 75093, United States

RECRUITING

University of Utah Health

Salt Lake City, Utah, 84132, United States

RECRUITING

University of Virginia

Charlottesville, Virginia, 22908, United States

RECRUITING

Inova Fairfax Hospital

Falls Church, Virginia, 22042, United States

RECRUITING

Sentara Heart Hospital

Norfolk, Virginia, 23507, United States

RECRUITING

VCU Medical Center

Richmond, Virginia, 23298, United States

RECRUITING

Seattle Children's Hospital

Seattle, Washington, 98105, United States

RECRUITING

University of Washington

Seattle, Washington, 98195, United States

RECRUITING

University of Wisconsin Hospital and Clinics

Madison, Wisconsin, 53792, United States

RECRUITING

Aurora St. Luke's Medical Center

Milwaukee, Wisconsin, 53215, United States

RECRUITING

Froedtert & Medical College of Wisconsin

Milwaukee, Wisconsin, 53226, United States

RECRUITING

Related Publications (12)

• Hemnes AR, Beck GJ, Newman JH, Abidov A, Aldred MA, Barnard J, Berman Rosenzweig E, Borlaug BA, Chung WK, Comhair SAA, Erzurum SC, Frantz RP, Gray MP, Grunig G, Hassoun PM, Hill NS, Horn EM, Hu B, Lempel JK, Maron BA, Mathai SC, Olman MA, Rischard FP, Systrom DM, Tang WHW, Waxman AB, Xiao L, Yuan JX, Leopold JA; PVDOMICS Study Group. PVDOMICS: A Multi-Center Study to Improve Understanding of Pulmonary Vascular Disease Through Phenomics. Circ Res. 2017 Oct 27;121(10):1136-1139. doi: 10.1161/CIRCRESAHA.117.311737.

  PMID: 29074534 BACKGROUND

• Tang WHW, Wilcox JD, Jacob MS, Rosenzweig EB, Borlaug BA, Frantz RP, Hassoun PM, Hemnes AR, Hill NS, Horn EM, Singh HS, Systrom DM, Tedford RJ, Vanderpool RR, Waxman AB, Xiao L, Leopold JA, Rischard FP. Comprehensive Diagnostic Evaluation of Cardiovascular Physiology in Patients With Pulmonary Vascular Disease: Insights From the PVDOMICS Program. Circ Heart Fail. 2020 Mar;13(3):e006363. doi: 10.1161/CIRCHEARTFAILURE.119.006363. Epub 2020 Feb 24.

  PMID: 32088984 BACKGROUND

• Jellis CL, Park MM, Abidov A, Borlaug BA, Brittain EL, Frantz R, Hassoun PM, Horn EM, Jaber WA, Jiwon K, Karas MG, Kwon D, Leopold JA, Maron B, Mathai SC, Mehra R, Rischard F, Rosenzweig EB, Tang WHW, Vanderpool R, Thomas JD; PVDOMICS Study Group. Comprehensive echocardiographic evaluation of the right heart in patients with pulmonary vascular diseases: the PVDOMICS experience. Eur Heart J Cardiovasc Imaging. 2022 Jun 21;23(7):958-969. doi: 10.1093/ehjci/jeab065.

  PMID: 34097027 BACKGROUND

• Hemnes AR, Leopold JA, Radeva MK, Beck GJ, Abidov A, Aldred MA, Barnard J, Rosenzweig EB, Borlaug BA, Chung WK, Comhair SAA, Desai AA, Dubrock HM, Erzurum SC, Finet JE, Frantz RP, Garcia JGN, Geraci MW, Gray MP, Grunig G, Hassoun PM, Highland KB, Hill NS, Hu B, Kwon DH, Jacob MS, Jellis CL, Larive AB, Lempel JK, Maron BA, Mathai SC, McCarthy K, Mehra R, Nawabit R, Newman JH, Olman MA, Park MM, Ramos JA, Renapurkar RD, Rischard FP, Sherer SG, Tang WHW, Thomas JD, Vanderpool RR, Waxman AB, Wilcox JD, Yuan JX, Horn EM; PVDOMICS Study Group. Clinical Characteristics and Transplant-Free Survival Across the Spectrum of Pulmonary Vascular Disease. J Am Coll Cardiol. 2022 Aug 16;80(7):697-718. doi: 10.1016/j.jacc.2022.05.038.

  PMID: 35953136 BACKGROUND

• Frantz RP, Leopold JA, Hassoun PM, Hemnes AR, Horn EM, Mathai SC, Rischard FP, Larive AB, Tang WHW, Park MM, Hill NS, Rosenzweig EB. Acute vasoreactivity testing during right heart catheterization in chronic thromboembolic pulmonary hypertension: Results from the pulmonary vascular disease phenomics study. Pulm Circ. 2023 Jan 6;13(1):e12181. doi: 10.1002/pul2.12181. eCollection 2023 Jan.

  PMID: 36618713 BACKGROUND

• Martens P, Yu S, Larive B, Borlaug BA, Erzurum SC, Farha S, Finet JE, Grunig G, Hemnes AR, Hill NS, Horn EM, Jacob M, Kwon DH, Park MM, Rischard FP, Rosenzweig EB, Wilcox JD, Tang WHW; PVDOMICS Study Group. Iron deficiency in pulmonary vascular disease: pathophysiological and clinical implications. Eur Heart J. 2023 Jun 9;44(22):1979-1991. doi: 10.1093/eurheartj/ehad149.

  PMID: 36879444 BACKGROUND

• Simpson CE, Hemnes AR, Griffiths M, Grunig G, Tang WHW, Garcia JGN, Barnard J, Comhair SA, Damico RL, Mathai SC, Hassoun PM; PVDOMICS Study Group. Metabolomic Differences in Connective Tissue Disease-Associated Versus Idiopathic Pulmonary Arterial Hypertension in the PVDOMICS Cohort. Arthritis Rheumatol. 2023 Dec;75(12):2240-2251. doi: 10.1002/art.42632. Epub 2023 Oct 30.

  PMID: 37335853 BACKGROUND

• Naranjo M, Rosenzweig EB, Hemnes AR, Jacob M, Desai A, Hill NS, Larive AB, Finet JE, Leopold J, Horn E, Frantz R, Rischard F, Erzurum S, Beck G, Mathai SC, Hassoun PM; PVDOMICS Study Group. Frequency of acute vasodilator response (AVR) in incident and prevalent patients with pulmonary arterial hypertension: Results from the pulmonary vascular disease phenomics study. Pulm Circ. 2023 Aug 21;13(3):e12281. doi: 10.1002/pul2.12281. eCollection 2023 Jul.

  PMID: 37614830 BACKGROUND

• Simpson CE, Ambade AS, Harlan R, Roux A, Aja S, Graham D, Shah AA, Hummers LK, Hemnes AR, Leopold JA, Horn EM, Berman-Rosenzweig ES, Grunig G, Aldred MA, Barnard J, Comhair SAA, Tang WHW, Griffiths M, Rischard F, Frantz RP, Erzurum SC, Beck GJ, Hill NS, Mathai SC, Hassoun PM, Damico RL; the PVDOMICS Study Group. Kynurenine pathway metabolism evolves with development of preclinical and scleroderma-associated pulmonary arterial hypertension. Am J Physiol Lung Cell Mol Physiol. 2023 Nov 1;325(5):L617-L627. doi: 10.1152/ajplung.00177.2023. Epub 2023 Oct 3.

  PMID: 37786941 BACKGROUND

• Lowery MM, Hill NS, Wang L, Rosenzweig EB, Bhat A, Erzurum S, Finet JE, Jellis CL, Kaur S, Kwon DH, Nawabit R, Radeva M, Beck GJ, Frantz RP, Hassoun PM, Hemnes AR, Horn EM, Leopold JA, Rischard FP, Mehra R; Pulmonary Vascular Disease Phenomics (PVDOMICS) Study Group. Sleep-Related Hypoxia, Right Ventricular Dysfunction, and Survival in Patients With Group 1 Pulmonary Arterial Hypertension. J Am Coll Cardiol. 2023 Nov 21;82(21):1989-2005. doi: 10.1016/j.jacc.2023.09.806.

  PMID: 37968017 BACKGROUND

• Rischard FP, Bernardo RJ, Vanderpool RR, Kwon DH, Acharya T, Park MM, Katrynuik A, Insel M, Kubba S, Badagliacca R, Larive AB, Naeije R, Garcia JGN, Beck GJ, Erzurum SC, Frantz RP, Hassoun PM, Hemnes AR, Hill NS, Horn EM, Leopold JA, Rosenzweig EB, Tang WHW, Wilcox JD. Classification and Predictors of Right Ventricular Functional Recovery in Pulmonary Arterial Hypertension. Circ Heart Fail. 2023 Oct;16(10):e010555. doi: 10.1161/CIRCHEARTFAILURE.123.010555. Epub 2023 Sep 4.

  PMID: 37664964 BACKGROUND

• McCormick A, Krishnan A, Badesch D, Benza RL, Bull TM, De Marco T, Feldman J, Hemnes AR, Hirsch R, Horn E, Kennedy J, Mathai SC, McConnell W, Pugliese SC, Sager JS, Shlobin OA, Simon MA, Lammi MR. Pulmonary artery compliance in different forms of pulmonary hypertension. Heart. 2023 Jun 26;109(14):1098-1105. doi: 10.1136/heartjnl-2022-321760.

  PMID: 36787969 DERIVED

Related Links

• Related Info

MeSH Terms

Conditions

Pulmonary Arterial Hypertension; Hypertension, Pulmonary

Condition Hierarchy (Ancestors)

Lung Diseases; Respiratory Tract Diseases; Hypertension; Vascular Diseases; Cardiovascular Diseases

Central Study Contacts

Elizabeth Joseloff, PhD

CONTACT

301-565-3004; PHAR@PHAssociation.org

Charles D Burger, MD

CONTACT

904-953-2000; burger.charles@mayo.edu

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 10 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 4, 2019
• First Posted: August 28, 2019
• Study Start: October 1, 2015
• Primary Completion: December 1, 2025
• Study Completion: December 1, 2025
• Last Updated: November 14, 2025

Record last verified: 2025-11

Data Sharing

• IPD Sharing: Will share

Locations

US (52)